Step 4 - Become a positive presence around people with autism and their families

Step 4 is predicated on the first three steps. You learn some stuff about autism. You get familiar with someone on the spectrum. You get comfortable with someone on the spectrum. Once you do that, you'll be in a much better position to be a positive presence in the lives of people living with autism. Of course, your experience of steps two through four might be different depending on the person you're getting to know. Let me provide a few remarks about what step 4 might look like in the case of Martin and those of us who take care of him.

How to avoid being a negative presence:

* Don't complain about your typically developing kid in front of us. I know you might feel heavy laden by a schedule filled with soccer practice and ballet lessons. I realize violin camp costs a fortune. And I'm sure the gifted and talented program at your child's school is inadequate. You should talk about those problems with someone else. My kid has never been able to be on a sports team. I have to pay an insane sum for my kid to go to camp and simply make smores. My kid gets poor grades and fails all standardized tests. Everyday I'm reminded of the parts of our world from which we are shut out. You need not pile on.

* Don't freak out, gawk, yell, eyeroll, or finger point at Martin or his family members when things are going poorly for him. You'd be surprised how many people feel compelled to offer physical signs of their disapproval of people with neurological conditions.

* Give us a break. We are so exhausted. Don't ask us to be on the PTA, extra church committees, non-profit boards, or anything else that non-exhausted people can do. Raising a child with significant autism is like an endless cycle of marathons. We are really tired most of the time. And you might be tired, too. But I don't have time to care about that.

* I could say more, but really, there is one simple rule here: think and think again before you open your mouth.

Being a positive presence:

* Show appreciation for an autistic person's individual gifts and talents. Voice your enthusiasm for the positive aspects of an autistic person's personality.

* Model this positivity with your children and other young people.

* Offer your material support. If you can offer respite, you are a godsend. And if not, you can do so many other things. Encourage family members to take care of themselves, help in that care, and offer words of encouragement. Feel free to bring over pizza and buy rounds of margaritas.

* Show the person with autism, their family, and other people that autism does not get in the way of your ability to feel and show love.

* Again, I could say more, but the same holds true. Think and think again about the ways you can be a supportive presence. Be creative. Be open. It's possible.

How Prince Can Rock Everything, Including Autism Awareness Month

Like so many people, I was undone by the news that Prince died last week. I could write forever about the role his music played in my life. I could go on about musical brilliance. But this is an autism blog. So let's talk about Prince and autism.

Let me start by asking if (and how) Prince pushed your limits? You don't have to Tipper Gore to be a little bit scandalized by the lyrics of Darling Nikki, right? You could love Prince breathlessly and still wonder about some of his fashion choices. You could own every album and still pause when he changed his name to a symbol.

For many of his biggest fans, those moments of hesitancy lasted hardly longer than a heartbeat. We accepted his ode to a woman finding pleasure in a hotel lobby. We figured it was our job to learn to love the orange sequin pantsuit. We learned that the name change resulted from a struggle to protect artists' integrity. And that just made us love him more.

Because his of artistic brilliance, we followed him down every weird path: before-its-time gender bending, sartorial outrageousness, melodramatic movies, and purple everything. We accepted it all and, of course, we were the luckier because Prince gave us his music and led us to places we should have been willing to visit anyway.

He should not have had to be so brilliant to garner people's embrace of his fluid gender, bizarre lyrics, and crazy clothes. If we were better people, we would have accepted everything without him having to give us something in return.

But he did take us to places we hadn't expected. Once there, we realized it was no big deal if people moved back and forth between the poles of gender we had assumed to be fixed. We recognized that outrageous clothes don't harm us. If anything, they can delight. And we accepted that lesser songs are just part of the artistic process.

It was easy to love Prince because he gave so much more than he asked of us. It's harder, of course, to love the weird when the benefits are less tangible. And here I make the turn to autism. Sometimes, and often quite unconsciously, people want something from people with autism. They search for some kind of genius within them. They hope that the autistic person is also a savant, somehow making them cooler to know. But this is selfish. Having preternatural talent should not be the price of autism acceptance.

Prince was beyond weird. But he also had preternatural talent. And so we loved him wildly, every part of him. Hopefully, he taught us not to be so stingy in our willingness to love the people that push our limits. He showed us that it's a beautiful thing to love those who are strange. Perhaps it's time to start giving and loving a lot more and forego our expectation of an equal return.  
 

Step 3 - Commit yourself to being comfortable around people with autism and their families

How does one commit one's self to being comfortable around someone with autism? First, you identify what's making you uncomfortable. Second, you figure out why it makes you uncomfortable. Third, you consider ways to think differently about the things making you uncomfortable. This whole process has little to do with the person with autism and much more to do with understanding yourself.

Because every person with autism is different, I'll start with the things Martin does that make people uncomfortable. He speaks loudly. He often ignores people trying to engage him. He invades people's personal space. He talks to himself. He wears strange clothes. He talks about obscure things that only interest him. He will follow and try to play with children who don't know him. He says he can't speak Spanish even though he can. He is melodramatic. And most important, he often doesn't comply with requests and commands made by adults.

It's this last one that really drives people over the edge. Interestingly, it bothers people in two different ways. And here, I move to the second part of this week's lesson: figuring out why behaviors related to autism make you uncomfortable. The answer is that it depends on what sort of parenting culture you associate with - old school or new school. Let me be clear: you do not have to be a parent of young kids to be a part of a parenting culture. You don't have to be a parent at all. Participating in a culture of parenting is to have opinions about how parents should raise their kids and how those kids should respond.

Old school parenting culture - I use the term "old school" because the parenting culture it describes often refers back to "traditional" practices that emphasize parental authority and children's obedience to that authority. In this parenting culture, the emphasis is on children learning their appropriate role in family and community life. Acting outside those expectations prompts discipline intended to change those behaviors. I grew up in this kind of parenting culture (as it is practiced in Amish and Conservative Mennonite communities). Children with autism pose particular problems for people associated with this parenting culture because they do not easily learn social expectations. They have trouble containing their impulses. Their brains make it difficult to understand what the community expects. People within this parenting culture often interpret behaviors related to autism as defiance to authority.

New school parenting culture - This term denotes parenting practices that have been popularized since the mid-20th century and focus more on the child as an individual. Parenting in this model focuses on nurturing the growth and development of individual children, with their particular talents, traits, and struggles. You might assume that autism would be somehow less troubling within new school parenting cultures. Let me assure you, it is not. New school parenting culture is deeply ambivalent about discipline. It's torn about what sort of discipline to use for fear of being too negative. At the same time, any one raising a kid knows that sometimes you JUST NEED YOUR KID TO BEHAVE FOR ONE MINUTE. For new school parents, autism is terrifying. These parents can hardly deal with the disciplinary struggles related to typically developing kids. When they see Martin, these parents tremble at the thought of how they would respond if their child displayed autistic behaviors. While folks associated old school parenting culture are maddened by Martin, new school folks are terrified.

If you want to get comfortable around someone with autism, you have to understand why autism makes you uncomfortable. I once had a long conversation with my aunt Elmeda, a Conservative Mennonite. It was so hard for her to understand that Martin doesn't pick up on what the community expects of him. She saw all the ways Martin acted irregularly. She expected me to use traditional forms of discipline. It made her uncomfortable that I didn't. But once she understood that those methods would not work with him, she could get over it. She could open herself to Martin as a person and to me as a parent. I don't have an analogous story to tell about someone associated with new school parenting culture. I find that these folks are highly invested in nurturing their kids using the mildest discipline possible while also shielding them from difficulty. It's hard for them to be comfortable around me as I parent Martin. I have to be very clear with him and use tools of behavior modification that make them uncomfortable. Further, Martin is also sometimes difficult. New school parents don't think their kids can handle something or someone difficult. It's hard for them to imagine how their kids might gain the wherewithal to befriend him.

If you're from an old school parenting culture, I encourage you to take a lesson from my awesome Aunt Elmeda. If you're a new schooler, I'm not sure what to tell you. I don't have time to figure it out for you. Consider this your task for autism awareness month.

Getting close to Martin: some helpful hints

This is a post about one single person with autism, Martin, my kid. The hints I provide can only guide you in creating a relationship with him. But they can, perhaps, also get you thinking about how to work on making closer relationships with other autistic people you might know. So here goes:

1. Be willing to accept rejection.

Because Martin is verbal, you can ask him if he wants to do something with you. He might say yes, which provides an opening for spending time together. He might say no. If he does, don't worry. It's not about you. He's probably doing something else that makes him really happy. And that something else might bewilder you.

2. Be flexible.

Most kids come up with odd things to create or do. Martin takes it to a whole new level. Being friends with him means assisting him in his imagined projects. One time, Martin asked if he could shape my long hair into the beards and mustaches of every president - in order. So I sat there while Martin moved my hair around my face, making me into a Benjamin Harrison that only he could recognize. On a recent Saturday, Martin asked me to accompany him while he looked for every single flower in his wildflowers of Texas guidebook. It took forever. And we got rained on. But Martin knows he can rely on me to be flexible, which is crucial for being his friend.

3. Stay positive.

This is a hard one. Sometimes behaviors related to autism can be really frustrating. It's completely reasonable to want to say "NO, stop doing that. It's (insert negative assessment here)." For many people with autism, especially those who have responded to ABA therapy, negativity prompts an automatic shutdown. Positive redirection and rewards are the way to help someone like Martin feel comfortable with doing something they don't want to do (or willing to stop doing something that is negative for themselves or others).

4. Be clear and concrete.

Some folks on the spectrum, including Martin, have trouble processing language. Abstraction, irony, and sarcasm don't compute for them. The best way to communicate with Martin is to use clear and uncomplicated language. It's best to focus on concrete things rather than dwell on open-ended subjects. The question that English speakers use all the time - How are you? - is not a great one for Martin. It can mean so many things. A better question might be - How is your day going? Another might be - Would you like to go for a walk or a bike ride?

5. Respond with respectful concern when things aren't going well.

When someone with autism is having a hard time, many folks around them feel uncomfortable. They might not know what to say or do so they pretend that nothing is happening. They hope that the trouble will soon pass. But it's easy for people with autism and those who care for them to feel other people's discomfort. If you can show that you see what's going on and you're not reacting with stress, that's a positive signal. If you offer help or just some moral support, your small actions go a long way. Martin can usually answer if someone asks him - Do you need help?

6. Enjoy yourself.

Martin can and will take you places you never might have imagined. He'll make you draw maps of ancient Israel, construct Lego figurines of the first ladies, and watch videos of contraptions made of dominos. He's really interesting and he'll let you accompany him on his flights of fancy if you're willing to play by his rules.

Step 2 - Commit yourself to becoming familiar with and close to people with autism

It took me forever to learn the importance of step 2. It was one of those cases in which you hear something, but don't really understand it until you see it enacted. Here's how I learned about step 2.

Martin attends a 5th grade class with his typically developing peers. He has support from a teacher who runs an autism-focused classroom. The teacher's name is Mr. Lambertson, but everyone calls him Mr. L. Martin is new to his school this year. To help us feel welcome, Mr. L. emphasized that the school included several classrooms focused on non-typical students. The school not only has an autism classroom, but also classrooms for kids with special behavior issues, hearing impairments, and a more generalized special ed classroom. Kids from these classes participate in varying degrees in the typical classrooms, depending on what is best suited for them at any given time. That means, as Mr. L. emphasized with us, that children at Martin's school have had lots of experience with kids who are not typical learners. They are used to being around kids with alternate forms of communication, behavior struggles, and learning issues.

While inclusion of kids with special needs was intended to make their educations better, it has also had the effect of enriching the lives of typically developing children. Kids in Martin's classes are able to watch their teachers, who have been well trained and are great professionals, interact with kids on the spectrum. By watching Mr. L. and other teachers, the kids learn about the best ways to interact with Martin. They learn the best ways to befriend him. They also learn ways to help him if he is having trouble. When they interact with Martin, they are able to see the many good parts of him. And when they see his struggles, they have some tools for how best to respond.

Our neighborhood school does not have an autism classroom. Martin is bussed to a school about 20 minutes away. He's been bussing the last four years and it never bothered me until I realized the truth of Mr. L.'s statement about the children at his school. Those kids have the opportunity to learn about the variety of ways that kids can have special needs. They get a chance to interact with kids with special needs regularly. They can become familiar with kids with special needs in a way that those kids' struggles are just one part of a much bigger picture.

The kids in my neighborhood don't have the chance to become familiar with kids on the spectrum. They don't get to watch adults who can model best practices for these interactions. Therefore, when they meet Martin it is easy for them to see his troubles first. And it is not their fault that they have no idea how to respond. No one has taught them how.

Being someone who supports kids on the spectrum and their families has nothing to do with being nice. It has no relation to how friendly or ethical you are. Symptoms related to autism can be extremely difficult to deal with. They are befuddling. They make most people feel uneasy and confused. What most people need is extended exposure to folks on the spectrum. With time comes familiarity. With time comes the realization that focusing on your confusion or wallowing in uneasiness is not going to help. At that point, you can commit yourself to staying calm and trying to see the problem from the perspective of the person with autism. This is something the 5th graders at Martin's school can do. They can do it because they see him everyday and they have learned to be comfortable with him on good days and bad.

So spend some time with folks on the spectrum. And just decide that you're going to get over your confusion and unease. Just put that away. It's not helping you. In fact, it's blocking you from being a person who can be present to someone with autism, a person who might need you to be the one to take that extra step.

When Things Feel Terrible: A Primer on Sensory Processing

Martin's ABA therapist taught us a very useful question: "Can you live with it?" When Martin is obviously having a hard time with something we can ask him this question. The question acknowledges that something feels wrong. It also inquires about whether or not Martin feels that the problem is insurmountable.

We use this question with Martin when he struggles with sensory processing, which is also sometimes called sensory integration disorder. There are sophisticated descriptions of sensory processing problems, but an easy way to think about it is to imagine moments when things you see, hear, smell, taste, and/or sense on your skin are beyond unbearable. For me, that would be seeing mauve slacks while hearing a car alarm and smelling a wet dog all the while wearing wool in summer. That situation would make me lose my mind. I could not easily live with it. Thankfully, I can't anticipate a moment when I'll have to.

For people with sensory processing issues, this unbearable feeling produced by sights and smells (etc.) happens a lot. It can be debilitating. It has been debilitating for Martin. Here's a partial list of the the things we either avoid (or must do) to address his sensory processing struggles:

• No Chinese restaurants (smell)
• No loud restaurants (which is almost all of them)
• Wearing exercise "soft" clothing all the time, even on Easter (sensation on the skin)
• No real haircut before the age of 6 (sensation on the neck and ears)
• No dentist visits before age 6 (all the senses)
• No hymn singing (which is not easy when you're born into a Mennonite family)
• No singing "Happy birthday"
• Sleeping in various tight-fitting spaces, such as under beds, in laundry baskets, ball pits, cardboard boxes, and once, with feet stuffed into a Tinker Toy can
• Swimming all the time (it's one of the only totally free feelings)
• So many foods to be avoided because of taste and smell
• Terror at loud toilet flushing and hand dryers in public restrooms
• Aversion to baby slobber (while at the same time adoring babies)
• No seeds on bread
• Sound-muffling headphones at elementary school music class 
• The list goes on.....

Now that Martin is verbal, we can ask him whether or not he can live with situations that test the limits of his sensory processing. I can ask him if he can live with the noise level in a restaurant. I can ask him if he can live with it if I put a bowl of cooked broccoli on the table. If he can't, we can determine if a work-around is possible. We can see about sitting outdoors where the sound can escape, rather than inside where it rings off the walls. I can put the broccoli on the other end of the table and Martin can grab a fresh carrot for his veggie. Martin's ABA therapist also works with him to increase his sensory processing capacity. It's hard to get through this world if any and all singing bothers you, so the therapist sings to Martin. She starts with a 10-second song and rewards him if he gets through it. Then she increases to 20, then 30, and so on. He has learned to live with the fact that some people (including me) just love to sing.

But the question is whether or not those of us without sensory processing troubles can learn to live with people like Martin, who have a sort of visceral need to wear exercise clothing in order to feel comfortable. Can we live with people who just can't go to Chinese restaurants, even if we don't understand how the smell can really be that terrible? Can we live with people who feel compelled to make negative comments when a beautiful, precious baby is slobbering? Can we live with people who respond to lovely home-cooked meals with a distorted face and slightly rude comments about how it smells?

Martin has been asked to live with a lot of things that make him uncomfortable. He works hard at it. He has to practice it. The question is whether or not the rest of us are also willing to live with things that make us a little uncomfortable?
  

Therapy

There are many reasons for the creation of Autism Awareness Month. One of them is the impact of early detection and intervention in the lives of children with autism. A common understanding among the varieties of doctors, therapists, and educators who work with people with autism is that the earlier the intervention, the better a child's chance to overcome some of the more debilitating aspects of the disorder. It's typical for pediatricians, psychiatrists, and neurologists to recommend a variety of interventions: a therapy called Applied Behavioral Analysis (ABA), speech therapy, occupational therapy, talk therapy, family therapy, and any of several possible medications that are otherwise used to address anxiety, ADHD, and impulse control. There's no definitive autism therapy cocktail. And it's not just because every kid with autism is different. It's that there is no handbook. There's no social worker or guide. Parents are often left to make up their own therapeutic regimen based on professional recommendations, online research, provider availability, insurance coverage (or lack thereof), and an assessment of the mental and physical wherewithal they have for all these therapeutic endeavors.

Even though it has overwhelmed our lives at times, I am grateful for the therapies that we've engaged for Martin. ABA has made possible everything from speaking sentences to toileting, from trick-or-treating to playing tag. Speech therapy gave Martin all the structures he needed to talk, converse, and understand. Occupational therapy allowed him to kick a ball, use scissors, and tie his own shoes. Family therapy has provided my husband and I all sorts of guidance for the parenting challenges we have faced. And medicine, well, I am grateful for it. Medicine has provided Martin a little help with impulse control. It has helped us immensely.

I would not be doing this week's duty of teaching readers about autism without mentioning that each of these therapies is also controversial to some degree. Many folks in the neurodiversity movement and autism self-advocacy networks are critical of therapies designed to "overcome" autism. They argue, instead, that society should learn to embrace a variety of ways of being in the world. They ask, for instance, why therapists make kids with autism work on eye contact. Why can't the rest of us just get used to a conversation without it? Some go further and wonder why the push for speech. They encourage folks without autism to consider that there might be ways to communicate without words.

This article from the New York Times, "The Kids Who Beat Autism," speaks to the many therapies that are used with kids with autism. It also explores the ambiguities that parents face. I hope you find it helpful.

Variety

 The autism spectrum includes people who speak and people who don't. People who use the toilet and people who need diapers. People who struggle to understand social expectations and people who figure them out. People who are great conversationalists and people who would rather not converse. People who memorize stuff and people who don't. People who hug and people who would rather not.

It's all sorts of people. Here are a few resources that exemplify the variety, the labels that are sometimes used to describe that variety, and the shortcomings of those labels.

"Ask an autistic" - Video series made by a woman on the autism spectrum. In this segment, she explains what autism is from her perspective.

This American Life, episode 317, Unconditional Love, act 2 - A father of a severely autistic child faces decisions about his son's future, including whether or not he can continue taking care of his child at home. (Listener note: have tissues handy)

"Where the Vocabulary of Autism is Failing" - An Atlantic article about how labels such as high-functioning and low-functioning obscure as much as they illumine.

It's hard to say where Martin is in relation to the cases presented in these examples. He's not like the woman in the first video, Amethyst, who clearly has no trouble speaking. Martin could not put sentences together, even at age 3 and 4. Learning to speak and have conversations took years of speech and ABA therapy. Martin is not like Ben in the second story. Martin is verbal. Martin sleeps. But like Ben, he has had meltdowns that have taken us to the emergency room. The final article speaks to the strange set of characteristics that Martin has. He is "high-functioning" in many ways and "low-functioning" in others. The power of that article comes in its acknowledgement that every story involving autism is different, which means becoming friends with every particular person with autism requires patience and diligence and openness.

Let's Radicalize Autism Awareness Month, Motherscratchers!

I hate Autism Awareness Month. I know the educational pieces produced for this month are intended to help non-autistic people understand more about what it's like to be on the spectrum. But I sometimes feel that these efforts also make it so that non-autistic folks know more about the spectrum and, therefore, are even more relieved that it doesn't affect them or their kids. Perhaps I feel this was because every April I experience an uptick in messages that say things like, "I don't know how you do it." The authors might as well be saying, "Thank God, it isn't me."

Martin and I don't really need the world's awareness. We need the world's transformation. So I would like to declare April "Get Your Shit Together Concerning Autism" Month. This process involves four easy steps, which can nicely correspond to the four weeks in April.

Step 1 - Learn about autism in its many forms.

Step 2 - Commit yourself to becoming familiar with and close to people with autism.

Step 3 - Commit yourself to being comfortable around people with autism and their families.

Step 4 - Become a positive presence around people with autism and their families.

This week, I'll post some resources related to Step 1. I'll start today where all my undergraduate students start their inquiries: Wikipedia. I'll add some more interesting stuff in the coming days: journalist pieces about various therapies, videos by adults with autism, some books about the history of this diagnosis, etc. There's a lot of stuff out there that can help you understand the many ways people inhabit the spectrum. But that is only the first step.

Martin has two behavioral therapy appointments a week. He takes medication. He has endured thousands of hours of speech, occupational, behavioral, horse, and talk therapy. He is already working hard enough. It's your turn, readers. Get ready to get your shit together. The world will not get better for people with autism if you know more. It will get better when you change.